Life with MS: Unpredictable and Undependable
Last updated: June 2021
After nearly two decades of fighting Multiple Sclerosis, my body has had some wear and tear on it. It doesn’t quite function the way it once did, except when it does. Sometimes I can walk, sometimes I can’t. Sometimes I can think clearly, sometimes I can’t. It’s a rollercoaster ride, and you never know when the hill or drop will happen. So, when I think about my body with MS, two words feel like they sum it up: unpredictable and unreliable. These two qualities can make life extremely frustrating, not only for me, but for friends and family as well.
Making plans with MS is extremely difficult. You never know when something might trigger your symptoms to rise to the surface. Maybe the weather doesn’t cooperate (or I take too long in the shower), and it gets too warm. When that happens, my legs and vision become huge messes. Maybe some unexpected stress starts to take hold, if so, I’m likely to be in some intense pain. Maybe nothing even triggers my symptoms; there are times when, for seemingly no reason at all, I just start to feel crappy. It can be nearly impossible to predict when we are going to feel awful, when parts of our body will stop functioning properly.
Constantly canceling plans
This unpredictability can be a huge liability for us. Friends, family, and coworkers often have a difficult time understanding why we have to suddenly cancel plans. Being fine one minute and then sick the next is a hard concept for people to comprehend. How could you not know or expect it? Well, honestly, we can’t, and it’s just as, if not more, frustrating to us. Knowing when our body is going to fail us can be nearly impossible. Sadly, it’s a huge reason that people with MS lose friends and also tend to alienate themselves.
Being able to predict when my body will fail is hard enough, but far from the only issue. Going hand in hand with unpredictability, my body is often unreliable. Meaning, I may start something, or go somewhere, and something will happen that forces me to abandon it. The same issues we talked about before apply here too. Various symptoms will come to the surface. Problems with walking, numbness, weakness, pain, fatigue, brain fog, and mood swings can all pop up at a moments notice. I may be out with friends and have to leave early or I may be at home working on laundry and have to stop. Either scenario is extremely frustrating. Not being able to rely on your body functioning properly for any amount of time, is an extremely difficult way to live.
A tough way to live
Having a body that is unreliable and unpredictable is a challenge to live with. These traits are huge reasons why we end up having a difficult time in relationships, whether they be with friends, family, or significant others. People want to be around others they can count on, and the very nature of our disease makes that difficult for us. These traits are also a huge reason why people have trouble working with MS. They may seem fine one minute but not the next, that makes any job incredibly difficult.
Informing your friends and family
The only real way to live with a body like this is to do as good a job as you can in informing your friends and family. There will always be difficulties, moments of resentment, and misunderstandings. However, those can be lessened by taking the time to explain your situation and by sharing information about our disease. It’s important to make people understand that these qualities are even more frustrating to us than they are to them.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: